TCS Daily

Good-Bye, Joan

By Duane D. Freese - September 27, 2004 12:00 AM

My sister died at 7:15 p.m. on Aug. 29, three months shy of her 58th birthday. Her struggle reveals both the good and the bad about American health care.

She had struggled with cancer for more than a year. Just weeks before her death, she had confidently told me, a smile on her face, "I'm going to beat this thing." It was an attitude that her doctors encouraged, as they should have, as attitude plays a big part in "beating" any disease.

And thanks to the development of new treatments, drugs and therapies, cancer patients have a lot more confidence they'll get better than in even the recent past. Cancer survival rates keep improving. Some cancers -- childhood leukemia, Hodgkin's disease, testicular cancer are even considered curable.

Much, though, depends on catching the cancer early. My sister's colorectal cancer wasn't.

The fact was, she hadn't been to see a doctor for years for a medical exam. She didn't like going to see them. She didn't want to complain. But that wasn't the only reason.

She was one of the 45 million uninsured. After her divorce, she had worked cleaning offices and boats. No benefits there. Finally, she landed an office job that had them but only after a person had worked with the company for about a year.

So, she treated her hemorrhoids on her own, until, just weeks before qualifying for her small business' health plan, she couldn't wait anymore. Immediately upon examining her, her new doctor shipped her to the hospital. Her one complaint was that she couldn't afford to go. The doctor and his office staff told her not to worry. They helped arrange for her to get into a Medicaid HMO.

Her treatment for her cancer was as good as anyone could get. Radiation reduced the size of her tumor, and left her with a colonoscopy bag, but she accommodated to it cheerily. She went home, where I visited her in August of 2003 before she went in for her first round of chemotherapy. She looked much as she always had, weighing about 145 on her 5 foot four frame. She was ebullient as ever. She liked her doctors and her visiting nurse, and had nothing but praise for her treatment.

She suffered one setback after another, sending her in and out of hospitals, nursing facilities and rehabilitation centers A spot on her lung; more chemo. Excruciating pain in her upper thigh bone; radiation treatment. A broken thigh bone; surgery inserting a pin.

In early July, she thought she was finally recovering. Then she couldn't walk; a mass of cancer was pressuring the spine. Back to the hospital for radiation treatment.

When I went to visit her in early August, her weight was 108. She'd gained five pounds, though. "I'm going to beat this thing," she said. On my weeklong visit, I told her about my starting drawing. She wanted to do so, too. I bought her a sketch book and some colored pencils. Her son and her other son's wife bought her more pencils and books on how to draw. I am told she often spent until the wee hours of the morning doing something she had always wanted to try and never had found time for.

While visiting I observed how well the nurses and others at the hospital personally treated her. I also saw that they had put another person's name on the white board informing staff to whom they were delivering their foods and medications, and got that changed. My sister also told me that at the nursing home they had tried to get her out of her bed on her bad leg, despite her objections, until she screamed in pain and they stopped.

She needed to gain weight if she was to undergo additional chemo to kill the cancer. But her appetite was suppressed, and most of the food didn't taste good to her. When a dietician came by, she ordered her to go on supplements of special shakes to improve. They didn't come for two days, until I made a special case to the nurses that she needed to start getting her shakes. Then the paperwork finally made it through to the kitchen.

I called her everyday after I left, until she was transferred to a nursing home nearby. Her son had gotten her a cell phone, but she kept losing it in the sheets, and I never was able to get through. At one point, though, she stopped taking her medications. The pills were different than the ones she'd been taking in the hospital. After two weeks, her weight was down to 103 and she had developed pneumonia. So, it was back to the hospital again.

I had intended to see my sister again in September. She died before I arrived.

Her sons in her home found two prayers that she had written on her intermittent return home. One asked God to heal her so she could serve him better. The other asked that if she died that her death would serve a good purpose.

That is my hope, too.

My sister never blamed anyone for her health problems, not even the aides who mistakenly tried to move her, so painfully, out of her bed onto her bad leg. They were, she said, "trying their best."

So, I will consider Teresa Heinz Kerry's remarks that "only an idiot wouldn't like" John Kerry's health care plan. So, too, her claim that President George Bush has "done nothing" about improving health care.

The facts are that the goals of universal, affordable, quality health care are not partisan goals. The debate is about methods, not goals.

President Bush has put in place new prescription drug benefits for seniors -- one reason the costs of Medicare for seniors will rise but their cost for health care will go down. Part of that reform also will require seniors get a physical exam when they enter Medicare -- a step that should encourage early treatment. The Bush administration also is instituting reforms that will encourage the use of information technology to eliminate the communications gaps that cost so much in money, patient suffering and even lives. And he wants to promote personal health accounts to provide additional coverage to 4.7 million now uninsured Americans. Cost over 10 years: $120 billion.

Kerry's health plan essentially would create a reinsurance pool for small business, encourage people to sign into plans like those for members of Congress and reputedly help 27 million uninsured. Cost over 10 years: $653 billion, according to Kenneth W. Thorpe of Emory University, who drew up the cost estimates for the Clinton administration's health proposals, to $1.5 trillion, according to an American Enterprise Institute study directed by Joe Antos, formerly assistant director for health and human resources at the Congressional Budget Office. The National Center for Policy Analysis has provided a middle ground figure for the cost of Kerry's program, but says unintended economic consequences of the plan could leave as many uninsured in the end as there are today.

Both plans come up short of transforming health care as former House Speaker Newt Gingrich, also of Emory University, wants to do. In his book, Saving Lives & Saving Money, Gingrich has noted that most health care reform seek to manage costs, not manage care to improve it.

Managing costs amounts to scrimping on the health care needs of people, trying to cut profits for health care providers or otherwise distorting incentives and medicine to meet preconceived ideas of what is practical. It ignores the fact that some increases in cost for health care produce better outcomes for individuals and the economy as a whole, as a recent study by Emory's Thorpe pointed out.

None of the managed cost approaches would have gotten my sister to get herself examined early, nor would it have improved the communication between the hospital and the nursing home to make sure her medicines and her nutrition were correct. Managing costs also would have limited the strides made in recent years that have made cancer generally less of a death sentence.

Truly managing care to improve it would have people practice preventive health care; seek diagnoses of their health problems early and make use of the best diagnostic techniques and communications to ensure the best treatment and drugs available were used in case of a disease.

Gingrich, to my mind, is on the right track. He wants to save lives first, and in doing so save money. And the fact that he is reaching out to Ted Kennedy and other liberal Democrats in his quest to transform health care indicates to me that he understands the most important thing about health care transformation -- it isn't any party's plan that matters, it is getting the job done.

Just as Business Week would have Kerry borrow from Bush Medical Savings Accounts to make his plan work better, perhaps President Bush could borrow some of Kerry's reinsurance ideas to make his plan more broad based.

Last week, some of that cross fertilization began at a forum sponsored by the National Center for Policy Analysis in which Thorpe and Goodman, author of the NCPA analysis of Kerry's health plan, were key participants. Health care is not a partisan issue. It's a family matter, at least to me.


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